My family member was diagnosed with Glioblastoma Grade 4.
We spoke with a “consultant” — and I say that because he hardly spoke any English and has only been in the UK for under a year. He simply repeated what we already knew and said they would send an oncologist to discuss treatment options.
That was the only positive part of the conversation. The oncologist came to see us and explained that chemotherapy is an option, but not radiotherapy, as my family member needs to get stronger first in order to tolerate chemo. He talked about getting home to regain strength for treatment.
Family member did begin to get stronger and was discharged home — but the very next day, became almost bedridden, and we feared maybe another stroke. After contacting the doctors and nurses, we took him to A&E, where they discovered an infection in the surgical wound. Now we’ve taken a huge step back, as treatment can’t begin until he’s strong enough again.
The only chance he had was chemo - and now we don't think that can happen as he's so weak.
Has anyone ever gone through this? Has your loved one gotten stronger after this infection and been able to tolerate chemo?
Sorry if this is all jumbled. It's been a month of nightmares and just doesn't stop with the set backs. I'm so angry at the hospital for letting this happen (the infection). They have been so bad at following up and just being dismissive and now we're back to square one.
Hi
a warm welcome to the online community. So sorry to hear about all that has been going on with your family member.
I supported my late husband G through the three years of his GBM journey. He developed a serious infection 48hr after being discharged from hospital following his craniotomy. He was re-admitted for 6 days then came home to continue his recovery. A couple of weeks later he also developed post-surgical blood clots in his lungs which resulted in another 3 days in hospital.
He did recover from these setbacks and completed the 6 weeks of oral chemo/radiotherapy. G was a fitness freak and a marathon runner. A few weeks after the treatment cycle ended he was back out running and in fact ran most days until about 8 weeks before he passed away.
A GBM journey is an emotional rollercoaster for all involved. Take it one step at a time. As a family we had mixed experiences with the hospitals and oncologist and if I learned one thing it is that open communication is key.
This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
For now though I am sending you a huge virtual hug and lots of positive energy.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
